Husband, Dad, Mechanical Engineer, Bass
Player ...
Obsessed with all things Engineering.
AMY
Wife, Homeschool Mom, Webmaster ...
Obsessed with all things Political.
RACHAEL
Daughter, Sister, Sophomore ...
Obsessed with all things Geological.
NICHOLAS
Son, Brother, 8 year old ...
Obsessed with all things Historical.
(especially Egyptian!)
Favorite Books/Curriculum
The Well-Trained Mind Singapore Math Greenleaf Guides Apologia Science AIG Science curriculum Story of the World
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Back to Shriners
Wednesday, March 25, 2009
Today was another trip to Lexington to Shriners Hospital. Nick had a 3 month check-up after receiving his new braces. This was Rachael's first time to Lexington. It's always worked out that she happened to be staying with friends whenever we had to go.
I actually remembered to bring my camera to get a picture with Nick & "Dr. T." Dr. Tylkowski is the Chief of Staff at Shriners and also Nick's Orthopedic Surgeon. I can't say enough good things about Dr. T and Shriners in general. Anyone who knows Nick, knows how much he can talk (and talk, and talk....) Whenever I try to shush him as he's talking about something that has absolutely nothing to do with the situation, Dr. T. always laughs and encourages him. He always makes sure that all our questions are answered and concerns are addressed - even telling us to call him anytime with issues that may arise. Everyone there is friendly and helpful. I've never met a rude person there - in any capacity - from the janitors to the receptionists to the doctors. I wish all medical facilities were this wonderful!
On January 5th, we returned to the Shriner's Hospital in Lexington to pick up Nick's braces. He chose a space theme this time. They're actually kind of cool looking. (at least they're better than his pink and pastel yellow SpongeBob braces that he got the last time!) He had a hard time getting used to these, but he's adjusted now.
Today we took Nick back to Lexington, KY to the Shriner's Hospital. They took molds of his legs for some much needed new braces. We have to go back again in early January to pick them up. Since I forgot my camera, here are some pics of his new bedroom...
Because of Nick's CP, we were able to get free tickets to a preview of the cMoe's newest traveling exhibit, "AccessAbility." The exhibit was pretty interesting. You could type in Braille, try out a hand-powered stationary bike (which is what Nick needs!), and see what it's like to attempt many everyday tasks while being handicapped in some way. However, it wasn't the exhibit that affected me the most. Since this was the preview, the museum was closed to the public and was only open to disabled children and their immediate families. Whenever I'm in situations like that, I am always reminded how incredibly blessed we are. While, yes, Nick does have some motor deficits, the fact that he has no cognitive delays or communication issues is such a blessing. We would have loved him unconditionally, no matter what his disability might have been. But on those days when I start feeling sorry for him because he can't do a lot of things that the other kids do, I need to remember evenings like this. There are so many other kids with the exact same diagnosis who struggle so much more than he does.
II Corinthians 12:9 - And He has said to me, "My grace is sufficient for you, for power is perfected in weakness... "
Day 254 - Nick's Table Setting & The Vilest Frozen Dinner Known to Man
Thursday, September 11, 2008
Tonight's dinner was memorable for two reasons.
The first reason being that Nick set the table all by himself today. He's "arranged" the plates, silverware, etc. before, but I never allowed him to actually carry the plates from the dishwasher to the table for fear that (with his balance issues) we'd have broken glass covering our tile floors. Despite every place setting being "uniquely" arranged, he did a fine job!
The second cause for our memorable dinner was that (rather than making it myself), I tried to save time by buying a frozen crock potstroganoff. With the exception of the boiled hamburger incident in college, this was the vilest meal of barely edible food - ever. We've had the beef stew crock pot meal, and it was pretty good, but it was unanimous on this one - no one could stomach it.
That said, I still have another bag in the freezer that I hate to throw out. If anyone wants to give it a try, it's yours for the taking! ;-D
Today was Nick's first appointment at Shriner's Hospital. We weren't really sure what to expect. He was first checked in, weighed (41 lbs.), measured (3 ft., 6 in.), and examined by a resident who ordered x-rays of his hips, legs, and spine. Then, the doctor examined him, showed us the x-rays, and discussed what they look for in patients with his form of cerebral palsy (spastic diplegia). He gave us the most thorough explanation of the condition (from an orthopedic perspective) that we've ever had. From there, we went to the physical therapy department where the PT examined him and gave us a daily stretching regimen custom tailored to his needs. According to the doctor, Nick will have follow-ups every 4-6 months. When he is a little older, they will perform computerized monitoring of his gait and muscle tone. This will allow them to pinpoint any changes and alter the physical therapy routine or determine when Botox or surgery is needed.
Since his birth, Nick has been in several different hospitals, clinics, etc. receiving treatment for his prematurity and CP. We've spent thousands of dollars on treatments, but everything at Shriner's is 100% FREE!!!!!
NEVER has anywhere been more thorough, professional, and kid-friendly! Our appointment was approximately 3 hours long, but we were never rushed, and EVERYONE took the time to make sure all of our questions were answered. If you have a lot of money that you're looking to donate to a good cause, Shriner's Hospitals would be that place. I will never again complain about the price of Shrine circus tickets or souvenirs!
Regarding Nick's Cerebral Palsy, the biggest concern that we currently deal with is his nonexistent balance. Earlier, he was running to the bathroom sink to "wash" his money. (Yes, now Jeff has to take the plumbing apart because of a small fortune in coins that now rests in the bottom of the drain...) Anyway, he tripped at the end of the hall and hit his head on the air-conditioning return vent. He now has a big goose-egg and 2 scratches down his forehead.
There is not a day that goes by that he doesn't fall (literally) dozens of times. Normally, he falls "well" - meaning that he's learned to fall in such a way as to not cause too much harm. However, there are still times when something gets in the way and he gets hurt. Fortunately, he's a tough kid with a high pain tolerance! I just praise God that he hasn't been seriously injured...yet!
With Nick's Cerebral Palsy, we've been warned by the neurologist to be on the lookout for learning disabilities. Because of this, I've been hyper-vigilant about trying to be sure that if there is anything wrong, that we catch it early. Since he started reading at such an early age, I don't think he has any problems in that area, but his fine motor skills are a whole different issue! Up to this point, he has shown no interest whatsoever in trying to write, draw, or color. It seems that he just gets frustrated when he tries to copy even the simplest shapes. I struggle to decipher if it's because he's just not ready yet (he's only 3!) or if it's a sign of a true problem associated with his CP. Fortunately, I found this stencil device at a local homeschool supplier. Nick loves it! It helps him to strengthen his motor skills while allowing him to finally "write" out the words he's been wanting to write.
Name: Amy Home: Indiana, United States About Me: I am a Homeschool Mom of 2 awesome children. This is my attempt at Project 365 - to chronicle our world through daily photos... See my complete profile
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